Saturday, April 19, 2008

TTTS has been classified into 5 stages by Dr. Quintero. The staging is not a great predictor of prognosis, however it helps monitor the disease progression. Everyone progresses differently, some people remain in Stage I or II and other people skip stages altogether.

Stage I: polyhydraminos(lots of fluid) in the recipient (Ursula), severe oligohydraminos(little fluid) in donor but urine visible within the bladder in the donor (Phoebe)Stage II: polyhydraminos in the recipient, a stuck donor (meaning so little fluid that the baby can actually get stuck on the membrane), urine not visible within the donor's bladderStage III: polyhydraminos and oligohydraminos as well as critically abnormal Dopplers (at least one of absent (Phoebe did have this) or reverse end diastolic flow in the umbilical artery, reverse flow in the ductus venosus or pulsatile umbilical venous flow) with or without urine visualized within the donor's bladderStage IV: presence of ascites or frank hydrops (fluid collection in two or more cavities) in either donor or recipientStage V: demise of either fetus. This staging system was descriptive but had not been validated as prognostically important

Presently I am in Stage I, which is great news. I was in Stage II before I had the amnioreduction, but have remained stable since. Although I have had fluctuations with the Doppler's (heart flows), it luckily hasn't been serious enough to put me into Stage III. Yesturday, the intermittent end diastolic flow that we were concerned about Monday corrected itself, and ALL Dopplers were normal, thank GOD. However, my fluid is starting to increase in Ursula's amniotic sac again. Friday she measured the deepest pocket to be 6.7 cm, which was quite a jump from Monday. Dr. M keeps trying to reassure me that under 8 cm is normal and not to be concerned, as this increase could be the difference of the baby peeing right before the measurement was taken, which was true, because the bladder was very small.But I can't help be worried, since to me, I just keep seeing the fluid accumulate...from 3 to 4 to 5, and now almost 7, which is pretty close to 8 if you ask me. I am NOT having the symptoms I had last time, severe shortness of breath, constantly emptying my bladder, and a hard belly. So I guess we just continue to wait and see.

It's been a long week, it definetly felt longer then 4 days between U/S's. But everyone coming to visit has really helped, and also the nice cards, and messages on facebook, and email have put a smile on my face, and the occasional tear in my eye. Please keep coming to visit, and PLEASE do not feel like you have to bring anything, I am happy to just have some company, that is what really helps the time go by.

I had a visitor on Thursday from another woman who had TTTS. She was diagnosed at 13 weeks!! She spent most of her pregnancy in Toronto, and had met with the Dr. who performed the laser surgery several times to discuss options, however she was very lucky and did not require surgery or amnioreduction. She was monitored 3x week initially, then twice a week and once a week towards the end. She was never on bedrest and delivered 2 beautiful little girls at the end of January at the IWK in her 36th week. One baby weighed around 4lbs and the other girl weighed 6 lbs. I really enjoyed meeting them all. I know that I have a lot of friends and family who are willing to listen to what I'm feeling, but talking to this complete stranger initially (and now my friend) really helped, because she's been through it. I really opened up to her, and told her my fears and my thoughts, and it was comforting knowing that she had the same thoughts when she was pregnant. So we'll definetly keep in touch...

Monday, April 14, 2008

"Stability is to remain unshakeable, without any fluctuation in all situations." In our situation, stability is key, and thankfully another U/S showed this today. Fluid accumulation remains stable at 4.2 cm in the deepest pocket of Ursula's amniotic sac, and plenty of fluid in Phoebe's as well. The bladders are still both present and working well in both babies, and Ursula's heart continues to be normal. Phoebe's heart I am little concerned with. Before the amnioreduction, she had an absent end diastolic flow, which I thought corrected itself after the treatment, however today Lynne told me that the flow was no longer absent, but intermittent. She wasn't too worried about it, but it is not normal which worries me. But she's the professional so I should just stop worrying and trust that she knows what she is doing. Also after a quick check of the cervix...she said bedrest was doing me good, because I've had no thinning since the surgery. Excellent, excellent, love good news.

We chatted briefly about starting on steroids in another couple weeks, once I've hit the 24 week mark. So not only will I continue to get bigger from laying on my butt all day and drinking 3 cans of Boost on top of my meals...(we may need to tear down a wall to get me out of the house by the end of this)...but I will also be ripped from steroids :)The steroids are to help with the girls lungs if I go into premature labour, and they don't benefit until a certain point in development which is after 24 weeks. I find that reassuring to know that they look into the lung development at that early of a stage.Well that's it for now, another U/S on Friday, which will be our 10th!

Oh...and NO, Phoebe and Ursula are not really the names Keith and I have chosen for the girls...

Thursday, April 10, 2008

I am now 21 weeks. The week went by surprizingly fast. It may sound silly to some of you to be excited about one week going by, but when dealing with a disease like this, every day and every week we make it through stable is a HUGE relief. It gets us closer and closer to a point of safer delivery.

I've had many people write me or call and ask what in the world I do all day on bedrest, so I thought I'd give a little description of my days. This week has been busy for me, which has been great. Saturday Randy and Tammy and the boys, and Jamie and Danielle and Molly came over for supper, so we had a big turkey dinner and the kids had a great time. The next couple of days I spent preparing for an interview for a job that I REALLY wanted. I had the interview Tuesday afternoon by teleconference, and found out today that I got the job!! YIPEE!!!

Wednesday was a typical day, I spend most of my mornings upstairs in bed watching BT, occasionally Regis and Kelly, checking my mail, researching, or resting. Mom or Dad bring my breakfast and boost up for me, and after I get dressed and washed up, I come downstairs shortly before lunch and spend the rest of the afternoon laying on my left side on the couch (and occasionally switching to the right) and stay here until it's time to go to bed. I get up only to use the washroom, shower and get dressed, and for appointments. The afternoons with Mom and Dad have went by fast, we chat, I read, talk on the phone, eat and drink Boost. Yesturday was the first day in weeks that I had the chance to get some real fresh air for a lengthy period of time. Dad dug out our patio furniture and I rested with my feet up outside, it was beautiful!! I can't wait for the day that I can go for a walk, or run for that matter, although I feel like it will take me years to build up any strength or endurance. Emily is usually picked up from daycare around 4:30, so she always entertains me until supper time. Keith gets her ready for bed around 7 ish and then Mom and I have a game of something and then it's time for bed. I will be very sad to see my parents leave this week, but realize they need a break too, from all the cooking, cleaning, driving me to appointments and picking up Emily, looking after Emily, and emotional support they have provided. I am really worried about Emily, as she's become very dependent on her Nannie, and I think she'll be extremely sad when she realizes she is not home. Her sitter Renae, said that when she wakes from her naps at daycare, she always calls for Nannie. Hopefully she'll adjust quickly to her other grandmother, Keith's mom is arriving tomorrow evening.

Today we kept Emily home, my friend Jen and her little boy Cameron came over to play and visit for the morning. Visitors are always welcome!! (as long as your not sick please). And then this afternoon I had my second U/S of the week.My biweekly U/S's always bring on some excitement and anxiety and take up a couple of hours of the week. Now that you know how exciting bedrest can be, here is what you're all waiting to read...

Phoebe and Ursula are doing wonderful and continue to hold their own...they both have good size bladder's, the Doppler's for the hearts are well within normal limits, and even Phoebe's circulation in her brain is normal, which is a relief. Sometimes the smaller baby, who donates to much blood, can have brain damage if the brain is not properly vascularized. There is no extra fluid in the Ursula's belly which is also a good sign. Ursula now weighs around 13 oz, and Phoebe 10 oz, therefore 22% difference between the two, which is stable from two weeks ago, but still considered serious when it is above 20%. The amniotic fluid measured both Monday and today, remained at 4.5 cm in the Ursula's deepest pocket, which is more then last Friday, but nothing significant to worry about yet. Dr. M said as long as we're below 10 cm, and the babies continue to do well, we will just keep monitoring. We are all very excited about these positive results and hope every week continues to be this positive. I am back to the hospital next Monday.

Saturday, April 5, 2008

The girls at work decided to name our babies a couple weeks ago, instead of calling them Baby A and Baby B, so I'm going to use those names from here on in. Phoebe is the smaller baby (oli - less fluid) and Ursula is the bigger baby (poly - more fluid around her).

I had a good week. I continued to feel really good, no dizziness, no shortness of breath, sleeping great at night, and feeling lots of flutters from Phoebe and Ursula. Yesturday morning I started to get short of breath again, and started to worry about the fluid accumulating, although I knew it wasn't as severe as Monday. I was very nervous before my U/S appointment as I think I will be before every appointment.

The nurse/technician always begins the U/S until a doctor arrives, however it was only a matter of minutes before Lynne showed her smiling face in our cubicle. Keith and I are starting to become quite familiar with U/S, and what we should be looking for. I had a good feeling initially when the girls showed up on the screen, it almost looked like a normal twin pregnancy U/S. I saw both bladders, the hearts looked good, and the babies were moving around constantly. An unhappy baby doesn't move so much. Lynne was also very pleased with everything, and measured the deepest pocket in Ursula's sac to be 3.8 cm which is so much better then over 10, which it was on Monday. (I don't know how much fluid was left after the amnioreduction, so I can't really say how much fluid accumulated since Monday). Although we were all very happy with the results, she told us we still had a long road ahead of us, and to stay positive, but remember things can change quickly. But still....Phewf! What a relief for a change, finally some good news to get through the weekend. I'm 20 weeks....

On our way home, I paged my friend Jan at work to meet me at the door to pick up some papers. To my surprize...Angela, Jan, Lori, and Kim came down with a a large mexican lasagna, and a large basket FULL of goodies. There was snacks, chocolate, bath and body products, magazines, Sudoku puzzles, wine (for celebrating once the girls are born), gift card for movies, movies, DVD's, electronic solitaire game, and more! AND a lot of cash to spend on something nice for myself...take out, movies, clothes, etc. ! I couldn't believe it, it really took me off guard, and I felt like I was going to bawl as soon as I saw them all coming towards me, but I held it together pretty well. As I went through the basket I became a little emotional...it was just SO nice and SO thoughtful, and I didn't expect it, it really just made my day even better. Alot of people added to the basket...The girls in the CR staffroom, and the CV surgery nurses/staff on 5.1 and 7.1. So if anyone is reading this blog that contributed, THANK YOU, THANK YOU, THANK YOU. I think you are all wonderful, and thank you for thinking of us during this difficult time.

Hope you all have a great weekend, next update will be after Monday's U/S.

Wednesday, April 2, 2008

I barely slept Sunday night thinking about the U/S and possibly amnioreduction and the risks of performing the treatment. I kept dreaming of the needle going in, and then my water breaking like a balloon was popped. I was very dizzy when I got up in the morning, my belly was much firmer and I pretty much knew that the fluid increased. At this point, I looked like I was 8-9 months pregnant rather then 5 months.

We didn't wait long to see Dr. M, I was still very dizzy, so the nurse gave me some glucose and cold cloths. I'm not sure if it was my nerves, or that I'm been on bedrest for almost a week already, or a little of both. The U/S really didn't show any surprizes. Unfortunately the fluid in Baby A was not getting any smaller, I was measuring over 10 cm in the deepest pocket, and Lynne had explained on Saturday, that chances are we would have to drain the fluid if it exceeded 8 cm by much. The babies were still healthy, although there was a little concern with Baby B's (smaller baby) Doppler for the heart.Baby B's diastole phase was showing an abnormal pause, however Lynne wasn't too concerned at this point.

As they prepared the room, I was very nervous and cried a little, Keith was there for support as always. All along I kept hoping that we would be one of the lucky ones and that it would all even itself out without treatment. It wasn't the treatment I was nervous about, it was the chance of going into labour. Dr. V also came in the room for the procedure to help Dr. M, as well as a nurse and I believe a student, or resident. It was very quick and painless. They drained 1600 mL of fluid from my uterus!! Then the cramping started and it continued to increase, so of course I was worried, even though Dr. M told me that cramping is common.It turned out to be nothing a couple Tylenol 3 couldn't fix. I was admitted to the hospital to be monitored for the next 24 hours which is considered the critical stage, and given medication to prevent contractures every 8 hours. Lynne did a quick U/S before I left the hospital to make sure everything was ok, and thank goodness it was. It actually looked like a had a normal twin pregnancy, however I know this can change. We're hoping that we don't have to do this treatment for a long time, but some people get it done every 3 weeks to 3 days. While other's only need it a couple times during the entire pregnancy.

I was discharged yesturday, late afternoon, and I feel great. I am not rushing to the bathroom every hour, I can breath better, the dizziness is gone, and I am so skinny ;) I now look like I am 5-6 months prego. Our next U/S is booked for Friday afternoon.

I really don't know what I would do if Mom and Dad weren't here. They've been a huge help with cooking and cleaning and helping with Emily. And it's also nice to have them here with me when I'm home and Keith's working. Emily was better with me yesturday, I didn't look as sick, and I think that's what scares her. She did lots of cuddling and we played together on the couch.

By this next U/S I'll be 20 weeks. 24 weeks is the first landmark, however still a very scary stage. There is a 50% survival rate (i'm not sure if this is for one, or two) and if they do survive a 1/3 chance of some type of handicap. 28 weeks is a much better landmark, with an 80% survival rate....however the goal is to make it to 32 weeks, where the lungs are fully developped and the girls have the best chance.

About Me

I started this blog in March 2008 when I found out that I was pregnant with twin girls diagnosed with TTTS. Because it was so exhausting and emotional for me to tell my story over and over again, this blog became my communication for family and friends. It's been a long journey with a very scary pregnancy, the roller coaster ride in the NICU, the loss of one of my babies, and trying to be a good Mom to my 22 month old little girl at home. Time does not change what happened, but it does help to heal...but for me, my saving grace was running. I started to run regularly after Alyssa was discharged from the hospital Sept 2008, and now I can't stop.

TTTS Donation Page

A child that loses a parent is an orphan.A man who loses his wife is a widower.A woman who loses her husband is a widow.There is no name for a parent that loses a child, for there is no word to describe this pain.